oh what fun!

Dear Diary,

Today I went to a hospital in Richmond, CA for something called an SPG block. In 11 years of having TN I had never heard of this procedure, which is unsurprising given how long it took to get a diagnosis (4 years) and the many failures of doctors to adequately treat me (my first neurologist prescribed me, despite sobbing in his office while chronicling my 4 years of suffering, what I found out later was a pediatric amount of Gabapentin, the first drug we try when diagnosed with TN). It was like being in a hospital, not going to your doctor’s office, also unsurprising given that I was in a hospital.

I had to undress and have a wrist band ID and all that jazz. I was brought into a big room with a skinny table in the middle of it, surrounded by a futuristic looking x-ray scanner and 6 monitors. The doctor was very nice and explained everything very well and was unreasonably good looking. First he numbed my nostrils with a thick gel of Lidocaine and then he put a catheter up my nose, past the point where you think you should put anything up your nose, and it felt like when you get chlorine water up your nose, that sharp jolt of chemical-y pain close to your brain. Next he sent down a rush of liquid Lidocaine to flood my sphenopalatine ganglion nerves. It lasted a couple seconds and most of it went down my throat. And then I waited for 15 minutes, which is the worst part actually because your head is bent waaaaaay back, propped by a pillow to be angled as far back as possible. I was more worried about the chiropractic implications then the tube in my face!

The hope is that the Lidocaine will seep through the thin membrane that lives back there and coat the ganglion nerves, who have an awesome name, no? The doctor was emphatic about how imprecise the procedure is, and did it in both nostrils even though only the right side of my face has TN. The procedure is just hoping that the Lidocaine reaches them, and then it’s just hoping that it helps. It’s not the trigeminal nerve we’re anesthetizing (WHY CAN’T WE DO THAT?!) so the chances are 50/50 it works. Actually, I have no idea what the chances are. I am trying not to get my hopes up. If I have learned anything about this condition it is that today is today and only today and there is no predicting even the simplest thing about this clusterfuck of misery living in my face.

(My friends and I used to call it my “Lady Pain” because TN effects more women than men. I blame men somehow.)

I said I’d talk about medication, so here is what I know. You can’t prescribe pain killers for this condition, not really. It comes and goes. If you took a pill when an attack started it would kick in just as your nerves were naturally letting go. This, more than any other medication fact, is the source of the most frustration for me. I am incredulous that there is not immediate help when an attack starts. Incredulous I tell you! So the first line of drugs are things like Gabapentin which are actually epilepsy drugs. They tell your nerves to stop being so dumb and crazy and firing when they’re not supposed to. So you take it over the course of the day, not as needed. It’s like an anti-depressant in that you are building up it’s presence in your body and your body ideally chills out.

I never had much luck on it, though it’s been my main medication for the past 11 years. Once I figured out that I could take hella amounts of it I did and I just can’t say for sure it helped. I was certainly in pain for months on end but maybe I had less severe attacks less frequently than I would have? Who knows. What I do know is that last summer I was on it for so long that it started to effect my mental state and eventually, when I went off it, I lost my mind. I did a dumb thing, admittedly, and went off it cold turkey (which, oops, I read later you should never do). Withdrawal was no joke and I became a anxiety monster. Luckily we were in NH at the aframe and I just did jigsaw puzzles non-stop. No joke, I did 7 1000 piece puzzles in 11 days.

I tried some other medication but was allergic to it and here we are now, trying new things. As I write this, 5 hours after the procedure, I am pretty sure it hasn’t worked, but I also haven’t had a bad attack. My lower back molar feels like it is deeply infected and the surrounding tissue feels inflamed and angry. Ho hum.